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Old 10-14-2013, 08:38 PM   #1
rhondalea
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Re: lingering side effects after finishing herceptin

All the typical side-effects passed very quickly for me--four months out, they were gone.

The lingering side-effect seems to be related more to the benzyl alcohol used to mix the herceptin. I had mild-to-moderate brain effects from surgical anesthesia and chemo, but the severe brain damage began with Herceptin and got worse with each infusion. After I was done, the symptoms continued to worsen, until I was virtually non-functional. Benzyl alcohol has a documented deleterious effect on cholingeric receptors, and apparently some of us are extra susceptible.

http://www.ncbi.nlm.nih.gov/pubmed/1725728

My endo prescribed Aricept (donepezil) which is a cholinesterase inhibitor used to treat Alzheimer's dementia. It has gone a long way toward healing my brain (except I had a TDaP booster a couple of weeks ago, and one of the "inert" ingredients has a similar effect which has wonked me hard, albeit, not so hard as the benzyl alcohol).
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2/6/09 Core needle biopsy: negative; Mammos through 2010: no change
3/30/11 Pea-sized lump in left breast at site of prior biopsy; mammo negative, sonogram not so much
4/14/11 Core needle biopsy: negative for cancer
5/18/11 Excisional biopsy 1.2 cm tumor, LVI, positive margin; ER+60%,PR+20%,HER2/CEP17 5
6/15/11 BMX: Left DCIS & LH; Right ADH; SNB: 2/3 nodes: 1.4 cm and 1 mm; ALND L1&2: 0/10; Stage IIa, Grade 3
7/14/11 CT/Bone scans NED; MUGA 66%
7/19/11 Biweekly dd AC w/Neulasta; done 8/30/11
9/13/11 Transfusion (Hemoglobin 8.6); MUGA 64%
9/20/11 Start Taxol + Herceptin; Taxol done 12/6/2011; continue Herceptin until 9/4/2012
12/27/11 Radiation - 6 weeks; 2/27/2012 - DONE! Yayyyy!
2/29/12 Start Tamoxifen 20 mg/day; continue until 2/28/17
5/16/12 Start five-years Metformin trial
6/19/12 MUGA 61%
8/21/12 Brain MRI NED (head still hurts, brain still fogged)
9/4/12 Herceptin done!
9/6/12 Port out!
7/11/13 Aricept 5mg for cognitive impairment; increased to 10mg as of 8/23/13; back to 5mg 12/2013
5/2014 Add Namenda 7mg
9/2014 Stop Aricept and Namenda; Neuropsychological evaluation
10/24/14 Start cognitive rehabilitation therapy
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Old 10-15-2013, 12:46 PM   #2
donocco
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Re: lingering side effects after finishing herceptin

As far as foot cramps its possible Quinine at bedtime might be valuable. At one time you could buy Quinine 325mg over the counter. You can't anymore. There is a prescription Quinine but now its very expensive and, as the indications are for malaria, I doubt insurance will cover it. When I had my own pharmacy I used to sell Quinine Sulfate 325mg for a few dollars a hundred
The muscle cramps Quinine was very effective for were the night and morning leg cramps seen after middle age.
The herceptin foot cramps may be very different but the
relaxing effect on quinine is general. Quinine, rarely, has caused blood dyscrasias (I think thrombocytopenia) and this is why it was removed from the OTC list. It was an over the counter drug for decades.


Maybe it would be worth it to have the doctor write out a prescription for a few tablets of Quinine and just buy them. See if Quinine is effective. If a full tablet is effective, try a half a tablet or even 1/4 tablet. Ive heard rumours that even the amount of Quinine in tonic water has helped the ordinary leg craps. It may be rumour. Quinine is the bitterest substance known and the bitter taste can be detected in dilutions as low as 1:100,000 if my memory is correct.

I hope this proves to be of some help

Paul
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Old 10-16-2013, 08:33 AM   #3
Becky
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Re: lingering side effects after finishing herceptin

Remember that Herceptin lingers in the body for quite awhile. It has a 25 day half life so in 25 days, half is gone but half is still there. And so on and so on. After 50 days, 25% of it is still there. So the nasal conjestion is logical because its still there for quite awhile. Also, fatigue is a problem not just from Herceptin but also emotional fatigue. You just don't realize the toll that takes on all of us. One day at a time.
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Found lump via BSE
Diagnosed 8/04 at age 45
1.9cm tumor, ER+PR-, Her2 3+(rt side)
2 micromets to sentinel node
Stage 2A
left 3mm DCIS - low grade ER+PR+Her2 neg
lumpectomies 9/7/04
4DD AC followed by 4 DD taxol
Used Leukine instead of Neulasta
35 rads on right side only
4/05 started Tamoxifen
Started Herceptin 4 months after last Taxol due to
trial results and 2005 ASCO meeting & recommendations
Oophorectomy 8/05
Started Arimidex 9/05
Finished Herceptin (16 months) 9/06
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NED 18 years!

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